Autism Around the World

Thursday, May 10, at 12 noon, U.S. Eastern time

Roy Richard Grinker, whose daughter is autistic, is a professor of anthropology at George Washington University. He is the author of Unstrange Minds: Remapping the World of Autism (Basic Books, 2007).

A transcript of the chat follows.

Rich Monastersky (Moderator):
    Welcome to The Chronicle's live colloquy with Roy Richard Grinker, author of "Unstrange Minds: Remapping the World of Autism." I'm Richard Monastersky and I wrote about Dr. Grinker's work in the article "Autism Unveiled," which ran this week. Please send in your questions for Dr. Grinker about his research or his experiences raising his daughter, who has autism.

Question from Paul T. Shattuck, autism researcher, Univ. of Wisconsin - Madison:
    I love your book and think we are long overdue to import some insights and conceptual tools from anthropology into the field of autism. Thank you very much for your contribution. There is one issue I am particularly interested in. Many children have ambiguous symptoms and are not clearly autistic, and do not clearly fit into any other diagnostic category...though they are clearly "different" and struggle with some aspect of development & social interaction. Sometimes parents or teachers will say these children "are on the spectrum." Or perhaps a specific diagnosis will be given in order to qualify for certain services even though the clinicians involved will admit to the uncertainty of the diagnosis (often called "alternate coding" in the medical literature). Indeed, the inter-clinician diagnostic reliability on the milder end of the autism spectrum is quite low (and the majority of children "on the spectrum" are on the milder end and do not have autistic disorder). Has our individual & social tolerance for this kind of ambiguity decreased over time? Or, conversely, has our "need" for labels to sort people socially and administratively increased over time? Do we see this in other areas of society? And has childhood itself become a more heavily scrutinized period of life over time? Why? What cultural changes are driving these trends? What are the implications for understanding autism and its prevalence?

Roy Richard Grinker:
    A big group of big questions! Certainly, there is a school of thought (used to be called "labeling theory") whose proponents argue that labels patholize human diversity. From that perspective, the increase in diagnoses on the autism spectrum, especially Asperger's, is an effort to make the student population as homogeneous as possible, at the expense of appreciating neurodiversity. But I'm not sure this is what is happening. Instead, neurodiversity does seem to be increasingly understood and appreciated. Not enough for many people! (but significantly more in comparison to earlier times). Childhood is scrutinized more and there are more labels (just look at the big growth of child psychiatry -- that's what they do -- they make diagnoses). The idea is that diagnosis should be beneficial. It should lead to something that helps the person diagnosed. In the past, even in 1994, when my daughter was diagnosed, an autism diagnosis might not provide many opportunities. It didn't provide us many opportunities for Isabel educationally (and she wasn't even coded with autism in the school system until 2001 -- she was "multiple disabilities"). But there is an explosion in knowledge and services which appears to be helpful. And as for ambiguity? Ambiguity never helped my daughter. When her peers saw her as "different" or "strange," they did not embrace her. When they saw her as someone autistic (which they know understand) they did embrace her because they had a framework for comprehending her.

Question from Rich Monastersky:
    In some ways, your research on autism seems quite different from your previous projects. How does it overlap with your prior work on African Pygmies and on relationships between North Koreans and South Koreans?

Roy Richard Grinker:
    In both of those studies, I was dealing with questions of difference (cultural, linguistic, physical) and how those differences were accepted or not by those in power. In the Korean case, one of the things I studied was the problem of how North Korean defectors adapt to South korean life and how South Koreans accept or try to destroy North Koreans' cultural differences. So...I suppose my interest in autism around cultures relates to this question.south Koreans don't want North Koreans to speak about their differences. It's that far off from other contexts in which the mainstream wishes to represent people who may in fact be capable of representing themselves. Many of the great blogs out there, like Kevin Leitch's Left Brain/Right Brain, Autismvox, and AutismDiva, deal with the question of how broader society, including the autism advocacy community, deals with the diversity of the human mind, tries to represent that diversity without letting the diverse try and speak for themselves. One of the biggest mistakes I made during Isabel's childhood was not to listen more to adult autistics. I should have known better from my research on the silencing of North Koreans.

Question from Raymond Linville, Radford University:
    With the increased cases of autism there have also been a rise in the number of clinical interventions. Could you please review the most efficacious or promising treatments?

Roy Richard Grinker:
    As a parent, it has seemed to me that the major developments in treatment have been in three areas: 1) behavioral interventions, especially those that are more parent-centered (like rapid prompting), which lessens the financial burden of parents, and which allows parents to do behavioral therapy by themselves in naturalistic settings (like at McDonalds) rather than just in the home with an ABA specialist. 2) psychopharmacology. I am not a physician, but medications have helped Isabel and parents tell me that medicines have made a big difference in some of their childrens' target symptoms, especially anxiety (again, I am saying this as a parent -- I AM NOT A PHYSICIAN). Parents I've interviewed who have children who have seizures have told me that the anti-seizure medications introduced recently have many fewer side effects, but of course this is the parents talking and one would have to ask a physician. 3) early intervention. As kids are diagnosed earlier and earlier, they are able to get interventions earlier and earlier. And though the jury is still out on how effective various treatments are, most clinicians I've spoken to agree that the earlier one intervenes the better. As for the multitude of other therapies, few have been systematically tested. That is really needed, especially for the more dangerous treatments for which there do not appear to be safety standards.

Question from Rich Monastersky:
    You make some controversial statements in your book. What has been the reaction to your assessment that the rising number of autism cases does not reflect a true epidemic?

Roy Richard Grinker:
    80% positive. 20% negative, though the negative voices are the loudest. Scientists have embraced my perspective because I'm not looking for reasons for the rise in prevalence rates that are unusual or highly speculative. Looking at how numbers are gathered by scientists and how scientists define what they are counting is a very reasonable place to begin looking for the differences in numbers and rates over the years. Many parents, however, have also found the book useful because they relate to my family's experiences. Autism is a sensitive and important subject. No matter what you say, there will be controversy.

Question from Maxine Kaplan, Austin Community College:
    I am not available for this discussion today but wanted to respond. I am not an instructor, and I do not know or understand why autism has mushroomed these last years, but I do know that, depending on the child's intelligence level, the disorder can be "cured." I know this because I have a family member who "had" a medium to high functioning level who WAS cured. One and only one family member must be trained by a specialist on how to work with the child, and the training must take place the entire day, day in day out. I believe the training is patterning but has another name or acronym. It may be Applied Behavioral Analysis" (ABA), It may take a few years (3) but there must be that commitment. This child behaved much like that of actor Dustin Hoffman, in the movie, Rain Man - only eating Nutrigrain pop tarts, not stepping on cracks, etc, etc. Therefore, it is my opinion that, and that of countless articles,for a child to overcome this severe, debilitating disorder, and for the success of the child, the child cannot and should not be shuffled around from one schoolteacher to another, year after year. This is not to say that there will be no advancement, but it may take a lifetime...instead of a few years.

Roy Richard Grinker:
    Thank you for your comment. ABA is a very well known therapeutic, behavioral intervention. Although it has been studied more than the other available behavioral techniques, the autism literature is sorely lacking in systematic studies of how different techniques affect different kinds of autism.

Question from Victoria Cannon, MSW tucson:
    How do you think we can help adults with autism and children with autism for that matter speak about their diversity and advocate for themselves? Instead of allowing others to speak for them and say what they need.

Roy Richard Grinker:
    Great question, Victoria. I think much of the advocacy begins with school staff as much as with parents. Recently, I had a freshman student who told me on the first day of class that he was autistic. And he told it to the entire class! The other students were not disturbed by this. In fact, they said they knew people with autism and understood much about it. That's how far we've come in the U.S. This student was taught in high school to talk to his teachers and tell them what he was entitled to and to tell them about himself. So he told me "I will do crossword puzzles in class, not because I am not paying attention, but because it helps me focus." Turns out he got the highest grade in the class. Anyway, advocacy is easier when there is less shame or stigma. And that's something our society is working on, and beginning to realize.

Question from Rich Monastersky:
    Can you describe your current project in South Korea relating to autism and what questions you are attempting to answer there?

Roy Richard Grinker:
    the current project in south Korea is a prevalence study, using the most rigorous methods available to us. we have screened about 30,000 kids, most in mainstream settings, and the trained child psychiatrists are doing ADOS and ADI-Rs on them (these are the gold standard assessments). This is in a country that claims to have virtually no autism. But we are finding lots of autism. This is an important study because a. it is the first epi study of autism in south korea, b. it is in a population that is genetically distinct, and c. it is in a population that has a different environment from the places in which most of the existing studies have been conducted. we have had to be really aggressive, and try to screen through both teachers and parents. We found that if we screened through parents we'd miss 10% of the cases. And we found that if we screened through teachers we'd miss 64% of the cases! That's how unreliable the teachers can be. so we screen through both.

Question from Rich Monastersky:
    What kind of advice would you give to researchers who are considering a project that, like yours, is so personal? Would you have written this kind of a book prior to getting tenure?

Roy Richard Grinker:
    No, I would not have written this book before I got tenure because it is written for a general audience. The book was reviewed in People Magazine (which is sold in supermarkets) but it was also reviewed in Nature (which, along with Science, is the leading academic journal for publication in the basic sciences). It was published by an academically oriented press, Basic Books, but still one that is a commercial press. To get tenure, one often needs to publish a very scholarly (and hence not very readable) account with a university press. But this is what tenure -- i.e., academic freedom -- is all about. What a shame if I could not have written this book because there is clearly an eager audience and one that extends from the ordinary person going to the supermarket to the scientist in his or her laboratory.

Question from Rich Monastersky:
    Are you encountering resistance in South Korea to your research or to your initial findings. In your book, you describe some reasons why South Korean society has resisted acknowledging autism.

Roy Richard Grinker:
    Some resistance at the level of the mental health establishment. Some say, "why are you studying this rare disorder? even kids who appear autistic are just kids ignored by their working mothers. south korea is changing and mothers don't pay attention to their kids." Well, anyone with knowledge of the history of autism in America can see the refrigerator mother idea here, and it's disturbing to see mental health professionals blame mothers. I am giving a talk in Korea in a few days and I have a powerpoint slide that says: "Myth: Parents are to blame for their child's autism." "Reality: No one is to blame for your child's autism."

Question from Kevin Leitch, UK:
    Can Professor Grinker tell us, what does he think are the biggest cultural impacts on how autism is perceived in the West and does he think these are positive or negative.

Roy Richard Grinker:
    The "West" is a very diverse area, and so it's hard to answer your question. In my view, one of the most significant cultural effects is the decline of stigma and shame associated with autism. Autism awareness in North America and Western Europe has spread -- largely through the internet -- to remote regions of the world. Societies that used to hide autistic people, out of shame and stigma, or because they believed autism was really some sort of demon possession or punishment from the supernatural world, are speaking up. Autistic adults who can speak are now visible. And families are demanding the services they deserve -- not because autism didn't exist before, but because of the large scale social changes that have increased tolerance and appreciation of the diversity of minds. Urbanization in both western and non-western cultures means that there are more nuclear families isolated from their extended families, so there is less social support. With less social support, people need to go to their communities and to their governments. My own daughter has profited from these changes. Our community has embraced Isabel.

Question from Mary Bell, University of Arizona:
    Don't most "interventions" assume that what we would call "normal" relationships are the most desirable? I'm thinking about RDI, for example. We have a basic definition of what it means to be fully human that tends to include things like empathy, and politeness, that many autistic persons find difficult. Yet the nuances of human interaction are so difficult, so fraught with seeming hypocrisy and rules for politeness, that I have noticed that Aspies sometimes disdain "neurotypicals" for the complex rules that often seem to them mere game-playing. I have a 17-yr old son with Asperger's Syndrome, and the interventions that have worked best for him included sensory integration (so he could actually process the information he was receiving), and variants of RDI that focuses on the basic building blocks of social interaction (co-attention, for example). I personally do believe that he is missing out on some of the joys and pains of human interaction - but am I just being neurotypical? How does a society decide these types of issues?

Roy Richard Grinker:
    What I say in the book, and this is no surprise, is that there is no "one size fits all." Something like RDI (relationship development) is aimed at helping parents and children work on the core social deficit so central to autism spectrum disorders. But a social deficit in one part of the world may not be a social deficit in another. I'm thinking of the ritual expert and master of all things that grow in the forest in Congo I knew who is probably autistic. Without his peculiarities, the village where I lived might not know a poisonous from an edible plant -- especially important in hunger seasons. just for the sake of argument, suppose one day scientists develop a way to neutralize the genes involved in autism. Might those genes be responsible as well for what makes us interesting and different (if not eccentric) as humans? Just a thought.

Question from Jennifer Howard, Chronicle of Higher Education:
    Do you have a sense of how good a job colleges and universities have done at balancing the needs of autistic students with those of the student body as a whole? What are some of the steps that educational institutions have taken--or should take--to make sure that autistic students can pursue a college degree?

Roy Richard Grinker:
    I wish I knew the answer but I have not studied how institutions of higher education have dealt with autism -- I only know GW. GW is doing well, in my opinion. They have certainly sought out my opinion, and they recognize that they have autistic students here at GW. I think that educational institutions need to help students advocate for themselves -- and this is true for any student with a disability. I'm amazed by how many students fail to tell me they are autistic or have dyslexia or something else until it is too late -- until, say, the day of the final. A school cannot make student register with the disabled student services office. But if they are registered, they can be in contact with that student and urge him or her to see the professor -- (see my earlier answer about the freshman in my class).

Question from Hillary Haldane, UC Santa Barbara:
    Congratulations on the book, I'm really happy to see your work made available to a wide audience. I am also an anthropologist who has a daughter with autism, and I'm curious to know if you bring Isabel with you during your fieldwork. If so, how does this work out for you and your family?

Roy Richard Grinker:
    I've brought her with us to Korea but the reality is that I cannot do fieldwork for long periods of time anymore. I miss my family too much, and it is tough for one parent to take care of two kids (one with autism)! Isabel does not do well in Korea (the odors, the food, the sensory stimuli are too much for her -- she puts her hands over her ears a lot -- so I do not want to make her uncomfortable).

Question from Rich Monastersky:
    How are attitudes changing in South Africa about autism? In the book, you describe an amazing story about a Zulu boy who was taken to a traditional healer, who diagnosed the boy with autism.

Roy Richard Grinker:
    I do tell a very hopeful story of a wonderful little boy, named Big Boy, and how he ended up getting fantastic care and education. There is certainly more knowledge and awareness of autism than ever before in South Africa, but the question of changing attitudes is hard to answer because the country is so diverse. South Africa has an extraordinarily robust medical system (as evidenced by the large numbers of Americans who travel there for surgeries), and even a healthy psychiatric establishment. But they are not doing well at the level of community psychiatry. The government hospitals I've visited, the places the poor (the vast majority of South African citizens) must go to, are really tough places -- sometimes men and women, and sometimes adults and children mixed together in the same residential groupings. Many of these people are autistic, but grouped in with people have other issues, like schizophrenia. Increased awareness about autism can only go so far if the government does not have appropriate services.

Question from Jennifer Ruark, CHE:
    Should colleges be doing anything to be more open to autistic students who want a college education and can handle the work? What sorts of special needs do autistic college students have that would be difficult for colleges to accommodate?

Roy Richard Grinker:
    Many but not all people with autism are especially challenged by purely verbal teaching. So I recommend that a professor who has a student with autism provide as much written or visual instruction as possible (providing the student and the advising staff has determined that this will help). As for being more open: I think including the word autism in descriptions of the disabled student services offices would be a great help.

Question from Jennifer Ruark, CHE:
    Professor Grinker, could you talk a little more about how the DSM has expanded the definition of autism and autism-related disorders? I remember reading once about a child who had been diagnosed as autistic but was later found to have a hearing problem that was creating extra noise for him. He had been withdrawing into himself as a way to cope with the extra sensory stimulation and "recovered" after the hearing problem was treated. What kinds of symptoms or conditions that would not have previously been categorized as autism are being so categorized now?

Roy Richard Grinker:
    researchers are pretty rigorous and reliable in diagnosing autism spectrum disorders (except, as a previous questioner noted, there is less reliability when it comes to higher functioning people). clinicians, on the other hand, are less bound by assessments and the DSM criteria and will make diagnoses that benefit the child (e.g. it is conceivable that a child who is on the border and who a researcher might not call autistic could benefit from being in a class designed mostly for kids with autism, and hence is given a school code of "autism). In the past, however, autism was more narrow. People with seizures tended not to be called autistic and were instead diagnosed with seizure disorder. Childhood schizophrenia was common. also a host of others that were not even in the DSM: brain disorder, emotional block, seizure disorder with obsessive compulsive traits, among others. and let's not forget mental retardation. Unfortunately, many people with autism who were called mentally retarded actually have high IQs and were misdiagnosed. Also if there were clear medical reasons for the autism (PKU, tuberous sclerosis, or congenital rubella, fragile x, etc.) then the person was not diagnosed with autism but with the medical condition.

Question from Mary Bell, University of Arizona:
    My area of research is shame theory. Please comment on the role of shame in the changing perceptions about autism, here in the U.S. and especially in South Korea.

Roy Richard Grinker:
    In Korea: the greatest shame has to do with family. Autism is seen as a genetic disorder, hence the entire family -- past, present, and future -- is seen as damaged. This is why parents prefer only the mother to have the burden of the shame. She can say she was a bad parent (autism is commonly called "lack of love syndrome" in Korea)and this takes the burden off the rest of the family and also ensures that this mother's other children do not have too much trouble on the marriage market (where they could potentially be seen as damaged). Also: In Korea, an autism diagnosis in a family can lower the property value of that family's home.

Question from anonymous:
    I'm curious about your thoughts on overall autism acceptance -- with the increasing rates of diagnosis, what type of future do you see for families and adults with autism as far as work/school/life opportunities and acceptance? Will autism become a diversity issue like ethnicity? Thanks for your thoughts.

Roy Richard Grinker:
    I hope autism becomes a diversity issue. I think it's happening now. I have high hopes that Isabel will be involved in her community more than if she has been born at an earlier time. I think diversity should not just be about race and ethnicity.

Question from Keri Wertz:
    I'm sorry I have not read your book, but ever since working with developmentally disabled adults in a group home I have had a keen curiosity regarding autism. Based on your experience in different societies, would you say that autism is more prevalent in the US, or is it just more likely to receive a proper diagnosis? Autism seems to have some genetic components but at the same time, I wonder if the bright lights and fast pace of our American society lead to a diagnosis of autism when in fact the problem is just a hypersensitive child being bombarded with too much input. In less technologically advanced cultures, are these children more likely to be "normal" and less likely to "retreat" into self stimulation, and other repetitive behaviors that define a severely autistic person?

Roy Richard Grinker:
    I do not know of any evidence that suggests that autism is more prevalent in one place than another. There are higher rates of autism (in school records) in some states in the U.S. (e.g., significantly higher in New Jersey than in alabama) but this could be explained by the fact that there are more services for autism in NJ than in alabama, and hence more need to have an autism code in the schools. Autism rates are also higher in wealthier school districts in the U.S. again, could be the same explanation as above. I am not aware of any scientific studies suggesting that increased stimuli result in autism, though I suppose -- and this is pure conjecture -- that since people with autism are often hypersensitive, autistic people may have a harder time in high stimulus environments (but that's not cause -- just consequence).

Question from anonymous -- we're undergoing diagnosis in a small college town:
    Another question -- could you please talk more about what you see as the drawbacks of current definitions of autism?

Roy Richard Grinker:
    the current definition of autism is so broad that it can include someone who is profoundly mentally retarded and non-verbal and a college professor. With a concept that broad, there is a need to think about coming up with distinctive subtypes. to some extent we have that (PDD, Asperger's, etc.) but in colloquial usage it all gets boiled down to "autism" and many prevalence studies -- especially those that are records based, like those that use school codings -- cannot distinguish among them.

Question from Catherine C, Mission College, California:
    How much of the perceived rise in autism diagnoses do you believe is actual, and how much due to the improvement in diagnosis methodology and in the expansion of our definitions of autism? My daughter is classified as having an autism-spectrum disorder, and in researching our family history we believe that my husband, two of my siblings, and several additional relatives have the same disorder to one degree or another. When they were children, they were simply labeled "clumsy", "unfocused", and "absent-minded".

Roy Richard Grinker:
    In Unstrange Minds I use the phrase "true prevalence rates" a couple of times -- which I should not have done, because it suggests that there could be stable prevalence rates. prevalence can change, and it is conceivable that autism prevalence is higher. But I do not think so, because there is overwhelming evidence that social changes, and changes in psychiatry/psychology, education, and epidemiology have produced the higher rates. Take prostate cancer as an example. Prostate cancer rates were stable for a long time and then they suddenly spiked. the spike occurred when the PSA test was invented (so doctors could look for markers in the blood). Before that time they had to insert an instrument through the opening of the penis. So the test was infrequently done. Now there are more than million people diagnosed with prostate cancer who would never, never have been diagnosed before the existence of the PSA. Better, earlier detection led to something that looked like an epidemic.

Rich Monastersky (Moderator):
    That's all of our time for today. I want to thank Roy Richard Grinker for participating in this discussion. And I'd like to thank the readers who sent in questions.

Roy Richard Grinker:
    The hour is up. Thanks so much to those of you who asked questions. I hope my answers were of some help to you. If you have future questions, my email address is rgrink@gwu.edu